As girls with congenital heart disease become moms, proper care is crucial

Feb. 7, 2014

Manisha S. Patel, a pediatric cardiologist and adult congenital heart disease specialist with Greenville Health System, says for those former child patients, starting a family of their own means it's time to take a new look at their health care. / CINDY HOSEA/Staff

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Medical advances in the care of children with heart defects mean many patients are reaching adulthood — many more so than in decades past.

Manisha S. Patel, a pediatric cardiologist and adult congenital heart disease specialist with Greenville Health System, said for those former child patients, starting a family of their own means it’s time to take a new look at their health care.

Greenville Health System started the Upstate’s only adult congenital heart disease clinic in 2011. The clinic’s patient numbers have skyrocketed with about 100 – 125 ACHD patients seen each month. There are 5,000 – 8,000 patients with ACHD in South Carolina, most of whom are not in care at this time.

Patel takes care of high-risk young adults with congenital heart disease — those who might otherwise fall through the cracks unless they get sick.

“As they transition to adult care, a lot of them sort of get lost,” she said. “My goal has been to get those patients back into care. Young adults with congenital heart disease are at their highest risk in their 20s.”

The time when they most need that care also coincides when many are becoming parents.

“The way patients get back into care is when they get pregnant and they are concerned about the baby,” Patel said.

Patel said that there is a large population of patients with pediatric congenital heart disease in the region. Ideally, she wants to reach these former pediatric patients when they are contemplating pregnancy. Often, she only hears from them after a positive pregnancy test.

“It is exceedingly important for moms with congenital heart disease to get checked during pregnancy and after – ideally, before pregnancy,” she said. “There is a slightly increased risk for their babies to have heart disease.”

But those thinking about getting pregnant shouldn’t think their medical history will cancel out their plans.

“In most cases, it is manageable if they stay in care,” Patel says. “Many of these patients require other surgeries and other interventions in their 20s and 30s.”

Patel said some patients don’t consider the need for cardiac care until their obstetrician asks about the scar on their chest from heart surgery.

For new parents concerned about their own children having a heart defect, Patel said the Emerson Rose Act, signed into South Carolina law last June, can ease their minds. The act requires newborn screening for heart defects.

“That should provide moms with some comfort with their newborns,” she said.

If a baby is diagnosed with a heart problem, Patel, a mother of two toddlers, said there is hope.

“I can never put myself in their shoes, but should they ever get the diagnosis that their child has a heart defect, the surgical and medical techniques now are excellent,” she said. “The expectation is that their children will be healthy adults. It’s a wonderful medical story. They should remain hopeful.”